Precision Focused Medicine - Patient Week 8-11, March 2021

[A Former User]

Voice to text - thank you so much for this overview Carolyn... And for the potential red flags that you observed back then!

Richard I wonder if you would like to add your comments... Which as Carolyn suggests, are probably more contemporary?... And also your assessment of the current patient vs. research privacy ...and trust elements?
Do you have any formal connections to either the corporate side or to the university research side of personalized individualized precision medicine?
Thanks again for posting this for review and participation.
Toby

[A Former User]

Damn -- I just "lost" a follow-up post... so I'll try again:
I just came across this podcast from the Centre for Free Expression (about which I know nothing of its mission, philosophy or ideology)... and I haven't yet listened to the podcast.
https://cfe.ryerson.ca/events/protecting-privacy-digital-age

However the title/topic appears to be relevant to this "personalized individualized precision medicine" discussion thread and the concerns you flagged Carolyn, ... so I'm offering it here.
And its presenters and sponsors appear to have 'bona fides' in our country...

(After one of us has had the chance to listen to the podcast, it might also deserve to be posted as a separate discussion topic?)

[A Former User]

Carolyn has summarized the field and issues well and provided useful links.
Originally known as Personalized medicine, Precision Medicine now generally preferred.
I have no personal or corporate or university connections, my interest arose via work with NICE Technology Appraisal Committee and EUPATI (European Patients Academy on Therapeutic Innovation) where I received an invite to participate. Lots of promise, lots of risk.

[A Former User]

Toby, Good to see you at the COVID-END meeting this morning. Thank you for podcast link.
Continually learning, in constantly changing field ...

[A Former User]

Hi Toby, this sounds mysterious, doesn't it?? Precision medicine refers to a relatively new branch of medical research and treatment that has grown out of developing medicine and treatment that targets human genetic traits. The idea is that medicines are developed through genetic engineering that can target individual patients for more effective treatment. Molecular medicine is WAAAAY over my head, but here are two Wikipedia articles on that might help: Personalized Medicine and Precison Medicine.

I defer to Richard's interest, knowledge and experience on this topic. My limited involvement dates way back to 2014 when I attended a couple of genomics and personalized medicine conferences at UBC simply because I knew absolutely NOTHING about personalized medicine, but thought there should be a "person" attending [so representing the patient and the public].

One strong impression that I took away was that there were enormous profits to be made by entrepreneurial startups in precision medicine and related research. Industry was urging government representatives at these conferences to release the gold mine of patient data banks, and gloss over patient concerns about data privacy. Big Pharma was very interested in levering partnerships with the university and government. Ironically, industry was very particular about protecting research data confidentiality to ensure their achievements in the university labs weren't picked up by competitors!

Industry association representatives attending from the US scoffed at patient interests in confidentiality: "You don't want to be like France", they said. The senior executive from the UK explained that the National Health Service in England had "privatised" their patient databanks to avoid government constraints on data flow to industry. Nobody mentioned "trust" in handling personal health data.

I was singled out in the audience as the only patient-person in a room full of lead researchers and investors. They REALLY wanted patient spokespersons advocating for loser data rules and more government investment in research labs that host industry partnerships.

The context back then was that Precision Medicine held a promising future for Big Pharma profitability, since it had been struggling with new lines of research that would maintain traditional revenue volumes. The business case for developing new antibiotics commanding high enough prices was definitely fading.

Seems overuse of antibiotics allows bacteria to develop resistance to common inexpensive antibiotics at a much faster rate than industry can introduce new ones to take their place. Even then, new antibiotics still cost so much more than older cheaper mainstays. Check out Choosing Wisely Canada's campaign on antibiotic use HERE.

Maybe more PAN members can help elucidate this field of medical research and treatment? My exposure is very stale and very limited.

Best regards,
Carolyn

[A Former User]

Thanks Richard... after 3 years in some capacity as a "patient/caregiver advisor" I do feel occasionally overwhelmed as "another layer of the healthcare system's onion" is unpeeled ... my eyes water for a while... and then I settle back in with 'continuous learning as the field(s) change/evolve.

[A Former User]

thx for info & discussion on "Precision Focused Medicine - patient week 8-11, March 2021. The switch to the term Precision Medicine (PM) from 'Personalized Medicine' seems a reasonable move as this medical teaching initiative may replace 'evidence based medicine' at some point tho whether it results in 'more precise' or successful treatment is yet to be seen. A good link to a synopsis that provides a reasonable explanation and link to definition(s) and challenges of PM at the current time: https://medlineplus.gov/genetics/understanding/precisionmedicine/challenges/
Adding genomic testing may be the future of this laboratory based medical education initiative; although like many this work will be seeking 'patient volunteers'...

[A Former User]

Thanks Anita --

[A Former User]

Thank you Anita

[A Former User]

I will weigh in on this too as I have some interest in a group that is looking at "personalized healthcare", a related term. I was involved in a symposium last year on this topic where the key note was Bogi Eliasen, Director of Health, Copenhagen Institute for Future Studies. The term "personalized medicine" was seen as to narrow and suggested the focus should be more on "personalized healthcare" as a philosophy to guide an approach to research, delivery and everything in between as we work to improve the lives of patients. This would include rethinking the healthcare system not just treating and preventing disease for individuals.

I think we all as patient partners need to keep abreast of this as it will lead to massive changes some of which could be harmful and hopefully many of which can be beneficial. We need to be knowledgeable and involved in order to minimize the harm and maximize the benefits for people. Am still in a massive learning loop trying to understand this area and where I/we all can be involved. The risk is that decisions are made without our involvement to our detriment.